Paying for 24 hour care

[AMBOG]

Hoping that someone can help here. I am having a nightmare at the moment. Mum and dad 91 and 89 respectively, live 10 minutes down the road from me. Mum has advanced Parkinsons and dad has extreme memory loss, not diagnosed with dementia (over a year ago now) but borderline. They managed independently just until about a year ago when things started going down hill and of course I had to get more and more involved. Mum kept falling and getting mad with dad because he got less and less able to help her. Once she fell and they didn’t even ring anyone, despite having a falls alarm and she was on the floor for hours. I just happened to ring on my way home from work. My mum is a really stubborn and difficult character who was determined to continue with no help. We had loads of rows and difficult times. Well the inevitable happened and mum ended up in hospital then a rehabilitation home. After about 4 weeks she was released with a 4 times a day package of care. They are self founders so I organised it privately. It wasn’t enough. Mum would try to get up before the carers arrived and try to get dad to help her onto the commode. He would get angry and they would fall out. Mum fell 4 times in 12 days and ended up in hospital again. I arranged for her to go out to a nice care home. Anyway she has been there a week and it is not working. She is screaming and accusing the carers of hurting her. We have had to pay an extra £1,200 on top of the weekly fee of £1,160 to provide 1-1 to make her safe. She didn’t have a diagnosis of dementia at her recent assessment but she was definitely losing capacity and often being really nasty (not completely out of character but extreme) I can’t believe she has gone down so much in such a short space of time. The social worker suggested we try her at home and see if she settles down. That would be with 24 hour care. I must say I dread her coming home. Has anybody tried 24 hour care in the old persons home? It seems to me to be prohibitively expensive but I don’t know whether they over packages at all. I am tearing my hair out. That is with at least 7 calls from dad every day asking where mum is and if she is happy. It’s too much trying to sort mum out and then reassure dad constantly.

This sounds awful- no advice to add but wanted to bump for you.@hatgirl or other experts may be able to advise?

24 hour care at home is expensive but depending on needs can work out cheaper than 2 separate residential care placements (because it doesn't sound like your dad will last long on his own at home if your mum does need to be in care). The other thing to consider would be if it really did need to be 24 hours a day, or if they would be safe for a few hours here and there by themselves i.e. between lunch and tea time.

Is she under a Deprivation or Liberty Safeguard (DoLS) at her current placement? It's tricky, but I wouldn't make a decision for her to return home immediately if she initially agreed to go and hasn't been there long enough to settle in. I assume someone has checked she doesn't have urine/chest infection etc to rule that out as a reason for a rapid decline?

If your mum does go home and doesn't settle down at home you/the social worker will then have evidence that she may be eligible for something called continuing healthcare which would pay her care costs if her level of need was high enough.

If she does settle then great, you have something that works for now.

Remember that in these situations you just have to make the best decision you can at that moment in time. If it doesn't work you try something else. If it changes, you make a new decision based on what's changed.

Thank you for your replies. I feel like I put her in the home. A doctor did an update of her dnr virtually yesterday and she said she wanted to live and die at home. Before the last hospital visit she was tentatively agreeing that she might need a care home and I was getting brochures, so really after hospital she was probably expecting to come home. It’s awful having to make decisions for people who left it too late to make their own decisions. They saved carefully all their lives and have about 300,000 between them without the house but if home care is too expensive it could run out in a couple of years. It is a good idea to explore more limited time caring. The trouble is I haven’t seen her now for 3 weeks and I have no idea how much she has deteriorated . I rang the home 4 times today and still no one has spoken to me.

They have checked for infections and she isn’t under a Dols

My grandfathers care. Ended up being about £6000 a month

I think it's really hard. But stupidly expensive. My grandfather had 5 houses. Which were all sold for his care. Which of course is ok. But just sad really.

I'm an adult care social worker and have occasionally arranged 24 hr care. It's easier if they can manage with sleeping night care (where the carer can sleep at night or get up only once or twice a night) as then you can arrange a live in care package. Some care agencies in my area do these for around £900 per week. They use carers typically on a week on week off rota. They need a separate bedroom.

If she has capacity and didn't agree to go then she's been unlawfully deprived of her liberty and there shouldn't really even be a question of whether she should go home if she wants to.

If she hasn't got capacity and social services have made that decision in her best interests after consulting with you and you agreeing then they should have also applied for a DoLS. If they haven't then she is unlawfully deprived of her liberty.

I would check back with the social worker because it all sounds a bit legally dodgy, especially as she is kicking off it should be an urgent application if they believe they gave grounds to keep her there!

Gosh. Illegally deprived of her liberty. That’s awful. I called the social worker originally because mum was accusing my dad of smothering her and kicking and punching her. He is a very gentle mild mannered man but I did see him get really mad once and say that she was on the floor on purpose. It felt like a disaster waiting to happen. When I went down ( which was every day more than once) she was often crying and complaining about him. He spent the whole day doing her every bidding - getting drinks, cooling them down, heating them up etc. If care at home amounts to too much they will run out within 2 years but if she goes home without it she will definitely end up in hospital again and all relationships will have broken down. The social worker is not officially with us she came as an emergency because I told adult social care about mum accusing dad of violence and she has stayed because I so obviously need support and help. The fact that I can’t talk to mum makes it doubly difficult. She can’t hear very well and sounds so confused.

Right so unpicking things a little,

As you didn't mention it I've assumed that you don't have lasting power of attorney for your mum which I shouldn't have done but it does change things slightly in terms of the decision making. If you do have POA for health and welfare then social services will have let you crack on with finding her a placement without too much challenge. If you don't then they should have taken responsibility for that decision.

Regardless of this though if she is clearly stating unhappiness at being there then the care home/social services should have made an urgent DoLS authorisation request. Don't worry, you won't get into trouble if it hasn't happened but the care home might get a rap on the knuckles.

Secondly, for as long as your dad is living in their home it can't be taken into account for the financial assessment. She will also only be financially assessed on her half of any joint cash/savings.

It sounds like she needs a proper care act assessment and a social worker allocating to help you navigate it all. This is too complex for you to have to deal with on your own and you shouldn't be in this situation. I can only assume the social worker you have seen has purely been investigating a safeguarding vulnerable adults issue regarding your dad and hasn't taken any responsibility for the decisions regarding your mum?

She needs a capacity assessment to determine how much she understands about risks at home and is she understands the financial situation. Do you have power of attorney. I would speak to the adult social services safeguarding team about her behaviour as they are both very vulnerable. Has dad had a care assessment. Would it he safe for him if she went home even with 24hr care. How is he managing at the moment. Has mum got a parkinsons nurse you could speak to. What are the home doing about her shouting and screaming, maybe she needs a doctor and nurse review. Are they claiming attendance and carers allowance or get any nursing costs. With the care alarm you can get a falls detector which registers when someone falls and goes through to the responders. It might be an idea for dad to see his gp and they would need a full home assessment done before any decisions are made

Thank you again for your comprehensive replies. I have just spoken to a nurse in the home and she thinks mum has Lewy bodies dementia she spends all her time throwing things and shouting abuse at everyone, accusing them of poisoning her etc. I only have financial POA.
Dad manages fine on his own. I make sure he is fed, do his shopping etc. He just needs reassuring about mum all the time because he misses her. He can’t remember the recent awfulness. There was supposed to be a care home review but I don’t think that is happening. I have found a nice emi home. I will make lots of calls in the morning. Than God I am not at wiring until next week! I don’t know what I will do then.

If you do not have POA for health and welfare then it's not your responsibility to make this decision.

It's unlikely social services will disagree with you but your mum is entitled to a full and proper assessment of her needs and access to the legal protections of the mental capacity act and the DoLS legislation.

I also think for you it is an important process for you and your dad to go through and understand for your own peace of mind and understanding that the right decision has been made. Whatever that ends up being.

Thank you again. My first call in the morning will be to social services.

Just another thought, if you are looking at EMI homes then you really do need a nursing assessment and a CHC checklist completing.

Even if your mum isn't eligible for fully funded CHC if she requires an EMI level of care then she most likely will be eligible for the funded nursing contribution (about £180 a week).

Hope you get on ok today.

Thank you again. I will mention it to the social worker who I think is going to try and do an assessment today. I am waiting for her to ring me back( isn’t it always the case waiting for someone to ring) I spoke to the manager of the home and he also thinks dementia. However I spoke to mum too and she sounded quite normal. It is completely heart breaking. I have asked my 2 brothers, who live 4 hours away if they would come up to at least give dad some company because having to tell him where mum is 7 times a day and lie that she is happy is very hard. But apparently 1 can’t for the foreseeable and 1 can come in 3 weeks time. It makes it worse when you ask people for help and they refuse.

She really needs a diagnosis from the doctor which will help you all. It might also be worth speaking to the office of the public guardian to see what they can offer in way of granting guardianship and making decisions if she is found to not have capacity and also set up health poa for dad.

If i remember rightly the court of protection can appoint a deputy to take an important decision if someone lacks capacity and has no pia

HappyHammy

that's right they can in theory, but it's a long process and deputyship for health and welfare / personal welfare isn't in reality awarded particularly easily (its much easier to get deputyship for finances).

This is because most health and welfare decisions can be dealt with relatively straightforwardly at a local level under the Mental Capacity Act and the Best Interests processes enshrined in it.

The Court of Protection judges are more reluctant to give away the right to make decisions about someone's medical treatment and living circumstances than they are over finances. That's mostly because many financial institutions physically won't deal with you unless you have got POA/ deputyship for finances so it's seen as more essential.

From my own perspective as a social worker I'm always very relieved if someone does have POA In place for finances and personal welfare because most of the time it makes my job far more straightforward.

From a personal point of view I would want to be absolutely certain that the person I was trusting with decisions about where I lived, what kind of care I had and if it was time to switch off the life support machine would always have my best interests at heart and also wouldn't be too burdened by the huge responsibility. Its not necessarily a bad thing for these decisions to be made by a team of people including relatives rather than it all being put on one person.

I am going to wait for the social worker to do her assessment then she can transfer to another home in the short term and we will then have more time to review it. It’s so hard not being able to see for yourself. She clearly can’t stay where she is and she can’t come home at the moment.

We pay around £5k a month for live in care for my Dad. It was originally for my Mum as well, but she died a couple of years ago. There are cheaper ways of doing it but sometimes that involves directly employing someone, whereas we wanted the backup of the agency.

Good luck with it all.